My husband always tells me “you know how to eat and elephant one bite ate a time”. But what if you are not hungry? I find myself here lately fighting a lot of the so called monsters of Idd. I joined the site due to I have moved 2300 miles away from support friends and company. I moved from Texas to the east coast with my husband and step son. The first year was rocky adjusting to long week days of noone but my self at home ( and the dogs) to my husband and stepson pulling me like taffy in every direction. I think the main thing is the loneliness and the not fully understanding of what I have. A lot of times my stepson tells his father he is bord or he is upset that I can’t sit and play video games for countless hours . Sometimes my husband thinks that the meds are the “magic pill” to make it better. I have more up and down day than a baddly shot pair of pantyhose trying to stay up on a gog go dancer. The depression has gotten a lot worse . I used to be a fire starter I could make a room light up a community bounce back and do the “wonder woman” skit better than most. I worked , rodeoed , did nonprofit help, baked , went to nursing homes, played with kids till they were the ones saying “enough aunt april I am tired”. I lost spark can’t seem to find my flint and it seems like this cowgirl fell off a bronco she counldnt bust! I remember the first time I ever fell off a horse or bull " one mississippi two mississippi" those seconds to the ground seems like an eternity. Remembering all the times I felt like I couldn’t go on and was able to bounce back now I just feel I am in a deep pit I cannot get out of . I have tried to make my husband and stepson understand but I think they don’t understand cause they both don’t see me as often. I get more angry and at times stay in my room due to pain and depression. Makes it even worse that I used to feel pretty and with clumps of hair coming out weight gain and other issues I just don’t do anything . I feel odd cause some days I have pep and rush to do “everything” I have let go during the week and find out the hard way I can’t do it all. Swallowing my pride is a hard pill to gulp and nothing washes down the bitter taste of " you can’t or take it slow". Then I have other issues come up the seizures, the sjogrens, the hospital stints… I am feeling over whelmed and not able to hold it all back… sigh I know there are no magic pills but it sure would be nice to do half of the things I used to how about go for a walk with my dogs.
Hi Moonlight( cool screen name)
I can understand the feeling of isolation, loneliness which can lead to depression and this is not good for Lupus survivors. These symptoms are my daily battle, as I live in a state where my nearest relative lives 1 hour away. I received the Lupus diagnosis in August 2011 as working single mom not associating with my mother for about 2 years. Scared and depressed were words that I knew and felt, but, did not have time to feel all at once. Thankfully, my family and friends are very supportive and understanding, I still haven't shared my diagnosis, its still tough for me, but, with my 16 year old, but those who know me are just loving.The only thing that has kept me from imploding is this website and my 16 year old daughter.
Can you volunteer at a local organization a couple of days a week? Just to take your mind off the disease and its relapsing cycle? There are days, I feel like crap and my flares do start within 20 days (I track the flares) of an immediate stressful event or if I am getting a cold. So, I begin to reduce my work load in preparation of calling out or just working less to accommodate the oncoming flare. The ability to work and be around people without them knowing about my lupus and not treating me like a "patient" is a freeing and empowering feeling.
Currently, I am seeking for jobs within my profession that have less demand on my time with more telecommuting options built in, so I may work from home during a flare. Until then, I continue to change my life for accommodating this life change.
Sorry, I babbled. Hopefully, you can find something to take your mind off the disease and its process so you can enjoy great mental health. As for the health care provider thing, don't stress things you can't control, try to find a new RA under your plan.
Hope my rambling (at times) helped you.. Good Luck, you are not alone in these feelings and thoughts.
Hi there Moonlight butterfly, i so know where you are coming from. Having Lupus is a hard slog. I remember going to see this other doctor for pain one day, and she said to me "i see you suffer with abit of depression". So i couldnt help myself and turned round to her and said "well wouldnt you, if you had everything i have to deal with!". I did think i was abit rude saying it, but i thought if she had of thought about it, she would of realised what we put up with at times would be something that would get you down from time to time, and sometimes the depression is alot worse depending on what we are dealing with at the time. I know its hard for anyone to understand what we feel like, if they dont have anything like it. Alot of people think its easy and just to take the tablets and everything will be fine, if only eh? My life is like a yo-yo, up and down like mad. One lady on here said her way of expressing how she felt was that she said, she felt as though she had been run over by a truck, i thought this was an extremely good way of putting it. Sometimes when we are in the depths of despair, we cant really describe how we feel. Just feel reassured you are not alone with this. I am so pleased i joined this site, as i have met so many lovely people who understand how i am feeling and what i go through which really helps. Its a lonely old thing having Lupus. I, like you used to be really energetic, i used to teach dance, Latin American/ Ballroom, Ballet and Modern to children and adults, i also use to do triathlons, where i would run, cycle and swim so many kilometres. Now i would be lucky to break out into any speed. Also like you i have lost hair, and nearly all my teeth, so much so i get rude comments from ignorant people which doesnt help. We feel bad enough about ourselves without anyone else rubbing it in. I think the weight gain does not help one bit, i used to be really slim and fit, and now i am overweight and totally fit for nothing, hehe. All we get is to lose weight from those who dont have a clue. Its not that simple to lose weight with all the meds we are on. We are a shadow of our former selves. I do try and find other things i can enjoy that doesnt involve exerting myself. I read, and when i am up to it i do some photography, as a good while back i did a City & Guild in Photography. Because we appear to look okay to other people they dont get how hard it is for us either, which is another upward struggle, i find now if anyone asks me how i am, i dont bother saying it as it is, i just say i am so-so or not too bad, as its alot easier than listening to them prattle on about how well i look, and say really ignorant things like, "you dont look sick!". It is infuriating when people behave insensitively. A while back i said to my husband that having Lupus is so awful because we tend to become so isolated, not because we dont want to speak to people but more because they tend to avoid us, as they cant handle it, its like they either think its catching, or there is another thing, people are scared that if it can happen to us, it reminds them of how fragile life really is and maybe it could happen to them, and by looking at us it reminds them that, so they would rather not be with us for very long. I have spoken to lots of other people who either have sick relatives or are sick themselves, and they seem to agree that people cant handle being with us, so they either are rude or make inaproapriate remarks. You and i are similar in the fact i also have seizures, Sjorgrens Syndrome (which i always say it wrong hehe), Rheumtoid Arthritis, Fibromyalgia, aches and pains so severe most of the time, Antiphospholipid Syndrome, heart, lung, kidney, liver involvement. I am on chemotherapy to dampen down my immune system where it is attacking my blood and my immunity. I am susceptible to alot of bugs, infections etc. I am just getting over Pneumonia at the moment, i had it four times last year. I lost 7 pints of blood in the summer. I also have malabsorption, and more. Some times when i think about it all, it doesnt seem real, but i know it is, as i have to take 24 different types of medication which is like a meal in itself sometimes. So i do know how sad and awful you are feeling. You have come to the right place, as everyone here feels the same and will also be there for you and try and help lift your spirits where needed. We have to keep strong, although easier said than done. At the moment, you have to do what is right for you. Take care, i am thinking of you, look after yourself, any time you need a chat feel free to contact me, love and hugs Astrid40xoxo
nice to hear from the moonlight butterfly!
your lonely days are over (mostly)
i know it has really helped me to be in touch with others who know how i feel and dont get tired of me telling them about my own life with lupus// it is a big deal and it effects every part of our life, but when we share experiences and support one another something wonderful happen...in myny ways too odd to put into words we are almost better than before lupus...it sounds too weird when we say it out loud...but something happens to us that helps us grow in ways we might not be able to do without these experiences
Wow I never realized what good people are still out there
Hi Moonlight butterfly, it is refreshing to know there are wonderful and kind people still around for when you need them, and vice versa. I am so pleased you have found coming on here helpful, its been so lovely to talk to you, so you take care and look after yourself, love and hugs Astrid40xoxox
HANG IN THERE MOONLIGHT BUTTERFLY, I AM IN THE SAME BOAT, THAT WHY I AM GLAD THAT I FOUND THE FAMILY ALSO. I LIVE IN HOUSTON TEXAS, SO MAYBE I CAN KEEP YOU UP TO DATE ON SOME THINGS GOING ON. EMAIL ME ANYTIME. MANY BLESSINGS AND HUGS.